Iron infusion as treatment for primary RLS

[Jumpey]

Hello everyone. I am interested to know whether anyone with primary RLS has had iron infusions and whether this treatment has reduced their RLS symptoms. x

[Ikeeptrying]

Hi Jumpey,

I just had 5 iron infusions and found they help immensely. Took them a week apart. Simple and painless. I would recommend them thought they're not a "cure-all".

[Jumpey in reply to Ikeeptrying]

Thank you for this feedback.x

[OFgc in reply to Ikeeptrying]

How does the body maintain the iron levels after infusion? or in other words how often does one have to undergo them?

Thanks!

[Ikeeptrying in reply to OFgc]

I don't know the answers to your question. My GP just said I'll be retested in 3 months and then decide whether or not I need them again.

[OFgc in reply to Ikeeptrying]

Thanks. That kind of answers my question..

[Parminter]

I have had three infusions adding up to 500mg (mcg?). Double that amount is recommended.

I immediately felt more human, hopeful and even - dare I say it - happy.

It has softened everything, both the overt symptoms and the daytime fatigue and misery. LIfe seems possible again.

My ferritin level was 20, which is very low.

If your ferritin level is below 75, then just go ahead and do it.

I had the Volkswagen version of infusion, because I could not afford the Rolls Royce. The RR version is ferric carboxymaltose 1000, given in five divided doses, each dose three or more days apart.

Do it!

[Jumpey in reply to Parminter]

Thanks for this. And your RLS is primary?x

[Parminter in reply to Jumpey]

Indeed yes. Seventy-three years.

[Jumpey in reply to Parminter]

Thanks. I'll pursue this treatment with my GP.x

[Svengolly in reply to Parminter]

I want it ! .How or who prescribed it & where did u get it ?

[Parminter in reply to Svengolly]

I regret I am on the other side of the world.

But I had it after insisting on a ferritin test, then gathering all the academic information I could find, then dumping a neat, fat file of highly reputable research on my doctor's desk.

After that, he could not say no.

I just decided to take my fate into my own hands, rather than waiting (forever, probably) for enough doctors to be trained in this. They are not trained, and their knowledge is way out of date. They just cannot keep up, so you have to do it for them.

[Svengolly in reply to Parminter]

Thx 🙏.

Kudos to u 👊

I did same but my go said ok but wouldn’t order it cuz he was not familiar with it.😭

So your gp ordered it .. and u then got it from a technician at an infusion facility .... or is there a hemo dr then involved?

PS

What do u mean by other side of the world ?

[Parminter in reply to Svengolly]

No, he did it himself, starting the same day, as he happened to have a 100mg vial on hand. The rest I went out to purchase. I had three infusions, very slow drips, over a week. All GPs (and their nurse)s are competent to do this.

They go very, very slowly at first, watching for reactions. But reactions are rare, and they know what to do. It is not rocket science.

My doctor sees no cause for an expensive specialist runaround if he can do it himself.

[Svengolly in reply to Parminter]

Wow .🙀

. so where was this ?

[Parminter in reply to Svengolly]

South Africa. Our doctors are superbly trained and they do their housemanships and residencies in hospitals where they are required to cope with anything that comes along.

[Hidden]

So, i take it both members who replied have Primary RLS. ?

[Jumpey in reply to Hidden]

This is my question. If it is then I would pursue this treatment.x

[Ikeeptrying]

I'm not sure if my RLS is primary or not. I'd guess it is. I've had it most of my life.

[Jumpey in reply to Ikeeptrying]

It's primary if it's in the genes-hereditary - so you can tell if other family memebrs have it.x

[Yanyu]

My ferritin level was 48 and my doctor said the new guidelines were levels below 75 for iron infusion. So I went for it and it did nothing. Hope it works for others.

[Hidden in reply to Yanyu]

Raising ferritin levels either taking oral iron supplements or infusions doesnt work for everyone,

[Graham3196 in reply to Yanyu]

I have read that some people don't get any benefit unless the ferritin level is raised to more than 300

Some don't get any benefit at 300 either.

Graham

[Jf76]

Hello!! My husband has rls and he tried in the beginning Sifrol which made he feel horrible...his legs started to move early and early....he felt desesperated and decided to stop all medication.

Nowadays, he eat as clean as he can...all home made, organic, no gluten, no lactose. He takes at night rivotril 0.5mg which is very low dosage and he keeps his ferritin levels 300 he feel much better when he keeps his ferritin this levels.

The best time to do iron infusion is at night, because its is when the brain look for iron.

Recently I have research 30ch rhus toxicodendron could help aswell, therefore how its homeophatic he decided to try. I hope and I pray everyday for God send a cure for rls because I see how difficult it is and how brave you guys are...but I feel inside my heart that the cure its not far...Dont give up!

[Graham3196 in reply to Jf76]

Hi

What does your husband do to maintain his ferritin level?

How often does he have the ferritin level measured?

Thanks

Cheers

Graham

[Jf76 in reply to Graham3196]

Hello, I am sorry for the very late reply.

My husband takes iron infusion and this keep his ferritine in good level for years..

Another thing we just realize is when he eats cottage cheese at night he sleep very well and seems the legs also keep quiet. Just be aware of the cottage cheese dont have in his composition carragene, most of the company add this in cottage cheese and this can cause maybe cancer in the future...my husband found just 1 brand that doesnt put carragena however I am from Brazil...I am sure over there, there is plenty of more options.

How recently news saying RLS can be because of SIBO , he will do the breath test of Hydrogen and Methane to detect SIBO, when we have the result I let you know.

According research SIBO can be assyntomatic, especially if the person eats healthy meals like my husband, however he can still have SIBO that cause the RLS.

One thing I can garantee is the healthier you eat the more quiet will be your legs and the less you will take medication...

[Graham3196 in reply to Jf76]

Hi this is so confusing jsn't it. I would be interested to know how high your husband's ferritin level is. How often does he need an iron infusion?

If I eat "healthy" food I get RLS! I am also lactose intolerant so if I eat most cheese I get RLS I must make some inquiries about carrangene and see if I have that problem in Australia.

Since we last spoke I have had an iron infusion and it raised my ferritin from 108 to 343 12 weeks later my RLS has almost gone, I have to measure my ferritin again to make sure its staying high

Good Luck

[Jf76 in reply to Graham3196]

Hello Graham!

My husband developed rls in 2008 since that he had infusion 2 times...he measure his ferritine levels every 4-6 months.

Its very weird you have rls when u eat healthy, usually the most healthy you eat the best...

My husband avoid everything with lactose because 4 him makes his legs worst, however there is something in the cottage cheese that relax his legs.

He doesnt eat nothing with gluten...the tallarine(pasta) we eat doest have flour is made with a mix of quinoa with other things I can remember now..

I use a lot organic oats withoud gluten instead flour than I make pankakes, brownies all withoud flour.

He estays 1 year eating paleolitic food and his rls was almost gone, rarely he had something, however he decided to come back to eat more mediterranean style food because he wasnt feeling so good after long time in paleolitic beside his legs were very calm.

He will made the SIBO test as I told, latest research saying its the cause of rls, lets see what his result...and I let you know.

We keep in touch! =)

[Graham3196]

Thanks

[Kakally]

Hi Jumpey,

I’m lucky in that my first iron infusion (1gm ferric carboxymaltose ) helped massively for 5 months. The second (250mg) lasted 6 months . The third (250mg) lasted 10 months. The fourth (250mg) lasted 18 months . I had the fifth one (250mg) 8 months ago and am doing well. Iron is not the whole story, particularly as I had DAs for 3 years and 4 years trying to get off them!

I therefore require adjunctive help with low dose buprenorphine, but I am really happy. I had to fight++ to get my first infusion but now I am allowed to have a top up whenever my symptoms return as long as my ferritin is <450ug/L.

Yep I run along with a ferritin of about 5-600ug/L plus as long as my TSAT <45 and my phosphate is normal.

There is virtually no anxiety about ferritin levels of 1000 !